What is CFS?

So, I keep talking about CFS. I’ve told you that I have it, I’ve told you when it’s affected me and I’ve even shared a day in my life with it, but one thing I haven’t done is explain what exactly it is. That is my goal with this post. Here, I will explain what CFS is, clear up some potential confusions and explain important terms. That way, when I talk about my CFS, I can send you back here if you need any clarification.

What is CFS?

CFS, or Chronic Fatigue Syndrome, is a condition characterised by extreme fatigue that has lasted longer than 6 months. It is not a well understood disease. We don’t know what causes it, why things exacerbate it or why it sometimes just disappears. This means that while we can treat it and learn how to manage the symptoms, there is no known cure. For some people, it seems to resolve itself. For others, it is lifelong.

It is important to note that fatigue is not tiredness. Tiredness is what you feel after a long day at work. Fatigue is what you feel after a month with a newborn who refuses to sleep. Except, with CFS, there is no newborn, we just feel that way all the time. And sleep doesn’t solve it. In fact, unrefreshing sleep is actually a symptom of CFS.

CF vs CFS vs ME

If you’ve Googled CFS, you’ll recognise these terms. The differences are confusing, so let me clarify.

Chronic fatigue refers to chronic fatigue in general. This can be a symptom of another disease, such as fibromyalgia, insomnia, sleep apnea or even depression and anxiety.

CFS refers to the health condition entirely defined by chronic fatigue, particularly in the absence of any other known cause. It can exist alongside other conditions. For instance, I also have depression and anxiety, but my CFS is unrelated to them.

ME stands for myalgic encephalomyelitis. This is the British term for CFS, so you may see it referred to as CFS/ME. The two names for the same condition came about as they were being observed in the mid-1900s in both the USA and the UK. The two countries both named the disease, and then compared notes.

Symptoms

CFS has various symptoms and differs between people. However, there are two defining symptoms experienced across the board: post-exertional malaise (PEM) and brain fog.

PEM

PEM stands for Post Extertional Malaise. It refers to the worsening of symptoms triggered by activity.

Most people with CFS can engage in some level of activity.l However, how much we can do before we trigger our PEM varies from person to person and even over time. We refer to the amount of activity we can manage as our “thresholds of activity”, or simply thresholds. By being aware of our thresholds and taking breaks before we cross them, we can usually manage our condition relatively well.

NOTE: PEM is why exercise is not actually helpful for us. Unless we are careful, exercise makes things worse.

Brain Fog

Brain fog describes the cognitive impact of CFS. This includes forgetfulness and difficulty concentrating. For most of us, thinking feels like swimming through molasses, or peering through fog – hence the term! Brain fog tends to be the aspect I struggle with the most: I love being able to read and write and think, and when I can’t do those things, I feel bereft.

Pain

Unlike with PEM and brain fog, pain is not experienced universally, nor is it experienced in the same way. Still, a fair portion of people with CFS experience some pain. There are different types of pain: joint pain; muscle pain; headaches; sore throats; and lymphatic pain.

I experience muscle and joint pain, headaches and sore throats. I have found no pattern in what triggers the sore throats or headaches, but my muscle and joint pain are usually triggered by standing or sitting for too long. Just yesterday, I had to stand on a train for about 20 minutes, and spent the rest of the afternoon and evening in severe pain. In order to be able to sleep, I had to ask Mum to massage the painful muscles and then followed it up with heat packs for about an hour.

Unrefreshing Sleep

I mentioned this one in passing earlier, but it is worth explaining a bit more. This symptom does not mean that we never wake up feeling refreshed. Sometimes, we do. But I have found, in general, that it takes at least an hour, usually two, between me waking up and me feeling ready to start engaging with life in some way. I have also found that the mornings I do wake up feel rested, I end up experiencing more fatigue later in the day.

Flares

Flare is the term for periods when our symptoms are more debilitating than usual. It is different from PEM in that PEM is specifically triggered by activity and rarely last longer than a few days. A flare, on the other hand, is an extended period wherein all of our symptoms are worse. For instance, my CFS has been flaring for the last couple of months. As a result, I have experienced more pain and brain fog, and my PEM has been more easily triggered and more debilitating. This is, of course, in comparison to the few months of relative health I enjoyed earlier in the year.

Over to you

I hope that this has helped you develop a greater understanding of what exactly CFS is and how it works. The better you understand the condition, the better you will be able to understand and support those in your life who have it. There are probably more than you realise.

Also, do you have any questions? If so, please ask! Asking questions is the only way to get answers, and is one of the best ways to learn. So ask away, and I’ll be sure to answer!

Bibliography

Of course, I have not compiled the information in this article purely from my own experiences. I have learnt a fair bit from my time with the specialists at the Fatigue Centre in Newtown and from my own researches on the interwebs. Whilst I have not included all the sources I have read over the last few years, I have included the ones that may be the most accessible to you, the reader.

If any of what I am talking about here seems uncomfortably familiar, please talk to your GP. My journey towards diagnosis was (partially) triggered by my recognising symptoms in articles or talks like this one. Please don’t self diagnose, but if you are seriously concerned, begin an honest conversation with your GP about the possibility.

For now though, adieu!

http://www.fatiguecentre.com.au/

https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/chronic-fatigue-syndrome-cfs

https://www.healthline.com/health/chronic-fatigue-syndrome

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

A Day in A Life

Everything is exhausting.

Let me get that out there first. Everything - and I do mean everything - is exhausting. Showering, eating, standing up, getting out of bed - you know, the things people don’t think about taking energy? Yeah, they are all exhausting. And that is the thing that most effects my day to day life with CFS. Every step of my day, every move I make has to be considered. I’m constantly asking myself “Am I able to do this? Is it necessary? Is it worth it?”

But what does that look like? What does that actually mean for me, living with CFS? Well, follow along with me as I give you a run down of a day in my life.

Note: This is just my life. CFS affects different people differently, some people have higher thresholds of activity to me. Others have lower thresholds. If you know someone with CFS, don’t assume my experiences and theirs will match. However, I do get the impression that mine are generally relatable to people with CFS.

Mornings

Morning are hard. They are probably the time of day with the greatest variability, making them difficult to predict, as well as it just being hard to get going with fatigue.

Generally, I wake up at about 8, but it will usually take me a couple of hours to get up. 10 is usually the earliest I can expect to be able to get up, and even then it’s only for short periods of time, often driven by physical needs like food, water and full bladders. If I need to get up earlier, I usually can with the help of my trusty anxiety, but that typically means I’m more fatigued later in the day, and it’s not sustainable.

Sometimes, though, I wake up early and, as a result, am able to get out of bed earlier. Again, though, this is compensated for by being more fatigued later in the day.

The worst, and one of the most alarming signs of slipping health, are when I miss the morning entirely and don’t wake up until 11 or later. I have been known not to wake up until mid afternoon during severe flares, and have even slept for 24 hours straight on more than one occasion.

And here is the cat, curled stretched out against my back.

Afternoons

Typically my most active time of day. This is the time of day I am most able to be up and moving about. There are a few things I like to do during this time. These include, but are not limited to:

• Crafting - typically knitting or crocheting

• Reading

• Writing

• Cooking/baking

• Exercising - typically walking around the back garden, sometimes dancing, when I have the energy

If I have chores to do, this is the time I am most likely to be able to do them. These usually include light things like vacuuming my room and doing my laundry. If I am experiencing more severe fatigue, I will probably watch TV or YouTube.

I feel like it’s important for me to say, at this point, that I can in no way do all these things in one day. Sometimes I can do more things, but I’m generally limited to maybe three things. And TV. Because TV doesn’t require much from me.

Evening

Honestly, this time of the day varies from day to day, depending on how much fatigue I’m experiencing and how much I’ve done during the day. I can typically do dinner with my family, but how engaged I am and how much I stick around after I finish eating differs each day. But it’s typically not very long. Sometimes, I am able to go out with a friend for an hour, which is usually nice and often much needed. Sometimes, I play card games with my family. Although, again, an hour tends to be my upper limit.

Still, I am most likely to watch TV during this time. I generally enjoy having something I can focus on, without having to be very mentally or physically active.

Night

Nights are also a difficult time of day for me. I like to have a drink of tea in the evenings, and I don’t like drinking anything after I’ve brushed my teeth. Unfortunately, by the time I’ve had my tea, I am exhausted as well as fatigued, and getting up from my bed or my chair to get ready for bed is frequently an overwhelmingly difficult task for me.

As well as this, I struggle with falling asleep, and it can take me half an hour or more each night - not something that’s pleasant when you’re exhausted or fatigued. Sure, sleep won’t cure my CFS, but it’s still awfully needed to keep me functioning. Sleep deprivation on top of CFS is absolutely horrid.

Fortunately for me, I am generally a deep sleeper, and typically won’t wake up until morning. I like that. The nights when I dream are difficult to manage. Anxiety related dreams can be… interesting…

And, this is a day in my life. Other people with CFS are more limited with what they can do, and yet others are more able than I am. This is in no way representative of day to day life with CFS as a whole. But I hope it’s given you some insight into how difficult living with CFS can be.

What Actually is Self Care

You know, if I’m going to be talking about self care, it’s probably a good idea for me to clarify what I am talking about when I say self care. So, in this post, I am going to do just that.

I am going to define what self care is, give a brief overview of different areas of self, define some other important terms that will come up, and give you a little bit of insight into what self care looks like for me, personally.

Let’s dig in!

“Self Care” Defined

I personally feel that this is a fairly self explanatory term. Still, I want to pick apart what the words mean, and what the phrase means all together.

I’ll start with the easier word. Care.

Now, when you Google the meaning of the word “care” a number of different definitions comes up. These variations are based on the form and context of the word usage, but they all have a a similar idea at heart.

The Cambridge Dictionary, however, provides the clearest and most pertinent definition for this use of the word “care”. It defines “care” as

The process of protecting someone or something and providing what that person or thing needs.

Then, the second word in this phrase is “self”. Now, the concept of self is a massive, complicated philosophical question. However, here, in this context, self means yourself. Or myself. Also relevant is this definition of the word as provided by the Cambridge Dictionary:

The set of someone’s characteristics, such as personality and ability, that are not physical and make that person different from other people

Take these two things together, and we see that “self care” means to protect and provide for (look after) oneself (yourself). And because each person is different, that means what they need for self care will also be different.

Sure, there are some self care things that are pretty universal. For instance, brushing your teeth everyday constitutes as self care because you are looking after yourself, but it is also something everyone should be doing if they can.

Then there are aspects of self care that varying from person to person. For example, I love to paint my nails. For me, that is an important self care ritual. For my sisters, however, it is stressful and unnecessary. Also, they are studying in medical fields, so it is a hindrance. Therefore, painting their nails is not self care.

Different Types of Self Care

Over time, I will post about each of these areas (and others!) and explore them in depth. Still, I want to show you how broad and all encompassing self care really is. I also want to challenge you now to start thinking about ways you can take better care of yourself in these areas.

Hygiene

This is so important for your physical and mental health. This includes things like showers, brushing your teeth, making sure your clothes and bedding is cleaned regularly, keeping your house/bedroom clean. Just doing those little things, regularly, to make sure that you are keeping your body and your environment as clean and healthy as you can.

For me, this means things like changing my sheets monthly and brushing my teeth daily.

Food

This is something that comes up a lot, and that I think can be a problem for people. Or, if not a problem, something that is really stressful. It is so important to have a healthy relationship with food. Things that can be done as self care in this area can include: cooking, trying new recipes, seeing a dietitian. Really, it’s about making sure that you taking as much care of yourself as you can be with the foods you are eating.

For me, this means sharing the cooking with my parents through the week. We all get a chance to cook, we all cook with fresh, healthy ingredients and we cook a wide variety of food types. This means that we get delicious, healthy, homemade meals every day, but we aren’t overwhelmed with the need to cook daily.

And I’m not afraid to bake a brownie every once in a while!

Finances

Now this isn’t an area people talk about a lot when it comes to self care, but that I have realised is massively important. Money is so important and can be a huge source of stress in people’s lives. Therefore, I have come to believe that it is important to have a system of managing ones finances in place that helps to reduce some of that stress.

For me, this means having a system by which I track all of my spending and all of my income, and a strict budget for where my money goes. Knowing what’s happening with my money has made things so much better for me, and I’ve gone from having regular money induced panic attacks to pretty much none.

Emotional

This one can be so varied, but is so important! I’ll definitely dig into this one more later. For now, I’ll just say that as part of self care, checking in with ones emotional and mental health is important. As is knowing how to take care of yourself when you’re not doing so well. Of course, we don’t just want our self care to be reactive - we want it to be proactive.

Important Terms

Reactive self care

This is the type of self care that reacts to a problem that has arisen. A common type of reactive self care is going to see the doctor when you are sick. You have a problem - you’re sick - so you react by going to a doctor. This is a very short term, in the moment kind of self care. But that does not mean it isn’t important!

Proactive self care

This is the kind of self care that looks much longer term and says “how can I be establishing habits and routines that will help me to take care of myself in the long run?” This is much more about identifying areas that may become problems and making a plan to avoid the problem, or to face it head on. A common example of proactive self care is daily teeth brushing.

Trigger

Aside from the term “self care” itself, this is probably the most important term that I am going to define in this post. I hate the way “trigger” has become a kind of a joke, when actually, triggers and being triggered are very serious things.

In this context, a trigger is a psychological term which mentalhelp.net defines as

external events or circumstances that may produce very uncomfortable emotional or psychiatric symptoms such as anxiety, panic, discouragement, despair or negative self talk

Triggers are most often associated with trauma, and are often unique. When talking about triggers, it is important to realise that everyone experiences trauma differently, and as a result are traumatised by different things and have those traumas triggered - reawoken, poked at - by different things.

So, in this context “trigger” is both a verb and a noun.

The noun is the thing that is causing the trauma response, be that panic, discomfort, despair, anything along those lines.

The verb is the trauma response itself.

So, far instance, I was in a car accident last year. Ever since then, I find being in cars difficult and traumatic. In this case, the triggers (noun) are sudden stops while driving, a car rolling forward, fast driving. What it triggers (verb) are panic attacks.

So, here is a little taste of this wide, wide world of self care, and what sorts of things I will be talking about in more detail in future blog posts.